Archive for the 'Developmental' Category

On this day four years ago, the lid came off and little guy was able to hold his temperature. The A’s & B’s and weight gain were all that stood between him and home. We started focusing on his special foot and what he would need when he came home.

Foot stretches and PT have been part of D’s life since week 2. On Friday, we got the good news that his clubfoot correction still looks to be holding and his year off from braces didn’t seem to impact his structure. We are to keep doing the stretches and his doctor added a new one to strengthen the outer left side. We love his orthopedic surgeon, and it was awesome to hear some good news. It’s hard to believe he was only 4lbs, 10oz at his first visit with her.

At the four year old well visit, he’s taken a big hit on his weight and BMI curve which we were expecting to hear. He only gained 2.5 lbs over the past year. The good news is he did make a jump on his height curve up to the 20th percentile, so despite the trouble with weight gain he IS growing. His doc and I discussed the measures we had taken moving him to a private sitter instead of preschool for the winter to give him a break from all the sickness he had last year. His dad and I were hoping to prevent the hunger strikes. We went over a meal plan, and we need to follow up quickly if he stops eating. Last year, it felt like we were through the eating and weight gain hurdles so it’s disappointing, but at least we weren’t blindsided with it.

With very little prompting, I was able to get the referral for the other thing that I am determined not to think about until our April 5th appointment. His doc even recognized one of the authors of the research study that I brought to the appointment as someone he knew from our children’s hospital.

Well visit tomorrow to discuss all the things (and get shots, yuck!). The nurse called yesterday for the pre-planning phone session. I picture the RN’s at our pediatrician’s office doing paper, rock, scissors over who has to call me. “Oh that’s the mom that will actually have real, scary questions. I’m doing that one after lunch!”

I have my pediatric research data file and questions in hand. I really hope I am not over “Dr. Google-ing.” I tried to limit myself to one week buried in fear and seeking answers online. Then I stopped (until today) in an effort not to fall into what hubby calls “my cycle of negativity and panic.” Husband and I discussed our plan. We present our findings and feelings, we listen to our trusted pediatrician’s feelings, and if we aren’t comfortable with his opinion we will request a referral to the specialist at Children’s.

I’m still unsure about genetic testing. I don’t know if we should start with the genetic counselor and then go to the specialist. We’re just really lost still and we are praying that our pediatrician can steer us in the right direction without dismissing things entirely.

We’re also hoping our growth chart results are still ok. He’s been fluctuating between 28.3 and 30.6 pounds for the past year. He did top off at 31.2 at his last specialist appointment, but that just seems awfully small for a 4 year old. He was also borderline on anemia last year, so I mentioned whether we should do that check, also. And Orthopedics follow up is Friday for our first annual clubfoot check up after giving up night-night shoes!

On a positive note, HE EATS VEGGIES NOW!!!! One night we sat down at the table and he just started gobbling up peas. I was so flabbergasted that I stared, but luckily I kept my mouth shut. Now he will request peas as a snack. Preschoolers, am I right?

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

Our orthopedic follow up on D’s Ponseti treatment was awesome. His nurse and doctor couldn’t believe that he was the same 4 pounder they met in April 2012. 6 rounds of casting, 3 months of 24/7 brace wear, and 2 years of “night night shoes” and we are halfway done. His flexibility and bone structure looked good, and I got a mommy gold star for being a good patient and practicing good brace protocols.

From the crying 1 year old who took games, songs and both parents to get his shoes on properly, we now have an amazing two year old who gets his brace and brings it to me when he wants to go to bed early. He insists on attempting to do the buckles himself, and gives himself “mustaches” with the center bar. Daddy’s amazing game that got us through the 12-20 month old period.

I am excited about finding out the next step in his daytime orthotics from his physical therapist at PT on Friday. I think we’re going to be going with sure steps, and hopefully it will give him the support and stability he needs to continue making gross motor progress.

I feel a little guilty that he will have a new set of orthotics to deal with. My husband and I spent a long time debating it, but if we can help him avoid the pain that ruining his ankle ligaments would cause as well as be able to run with his school friends it will all be worth it.

We had our final NICU follow up clinic visit this week. The child I brought to this visit was a little on the skinny side, but was so completely different development-wise when compared to last June that I think his team was shocked. Thank you, Early Intervention! Last June, we weren’t walking, gesturing or talking. And the results from that June visit had this mama really scared.

This final visit was a great visit. I’m really going to miss his Physical Therapist, Christy. She taught me how to do his exercises for his hips and legs, and navigated me through the diagnosis of his clubfoot and what treatments and outcomes to expect in our NICU days. I didn’t realize how much I’m going to miss his neonatologist and the rest of that team. They’ve scared me and reassured me, and gotten us through moments we never expected.

We are going to be getting him fitted for orthotics soon. In addition to the left clubfoot, he’s having a lot of issues with balance and transitioning still. We’ve increased his PT visits with EI from once every 3 weeks to once a week, and decreased his DI visits from once a week to once a month. If we can’t get his feeding habits to improve, we’re to do an eval with OT through EI in the next 60 days. The neonatologist warned me that the low tone would follow him for the rest of his life, but that it shouldn’t stop him from any physical endeavors he wants to pursue.

So goodbye, birth hospital. The rest of Drake’s follow-ups will all be with Cincinnati Children’s from now on. Posters for March of Dimes in April are usually made at his birth hospital, and once the restricitions of cold and flu are lifted we plan on taking a trip back to the NICU.

I’ve been thinking alot about that whole “catch up by two” thing as his birthday looms next week. I’m not sure about Drake, but I’ve certainly been in a better place emotionally in the past few months. I’ve done a better job of taking care of me and my family. I let my health go pretty far downhill in the first 6 months after his homecoming. It’s nice to feel more like ME.

Happy New Year! What is it about almost two year olds that make it so hard to carve out blog time?

Last week, was a huge week for us. Well, it was half a huge week. We were supposed to have our second to last NICU follow up clinic, but Drake was sick and coughing so no way was I taking him to the same floor the NICU he stayed in is on. I called and rescheduled. I hated having to do it because the next slot available was March 11th. Those appointments go fast and you schedule them about 4 months in advance. I was also hoping to have his Neonatologist and Physical Therapist’s input for his IFSP meeting last week.

We reviewed old outcomes with both therapists and his coordinator for Early Intervention. I am extremely happy with how much he progressed in the past six months. I am sure he would have done some of it on his own, but the guidance I received to help him has been invaluable to me.

Last goals were to sit up without support and without using “W” leg placement, to use gestures to indicate wants and needs, sign or use words to label objects, stop throwing food and utensils in frustration and eat solid food regularly, and transition from cruising to walking without support for several steps. These goals were set last July at 17 months.

This time we’re working on walking fast without balance isssues, his flat feet, chewing and swallowing more solid foods, learning to reach for objects on tip toe in preparation for jumping, and the strength of his left hand/arm which he refuses to use. He’s being switched from mostly developmental visits to mostly PT and some occupational visits.

Drake’s first day of school is scheduled for this Wednesday. I am worried about how sick he’ll be at first and excited to see how he is with other children. I know I’ll be both proud and weepy and can’t wait to take first day pics.

I also learned last week that this is as north as I ever want to live, and that my house was built in the 60’s and is drafty as hell. -48 windchills are too much for this Louisiana girl to handle! Today it is 100 degrees warmer. This 51 degree day feels like May.

We never think we’ll get here . Sure, I know what it feels like to get up 3 times a night to make sure a hernia isn’t strangulated. Or to cook high calorie formula at 3am because I forgot to wash the dishes on schedule. Or just because I feel like making sure he’s breathing.

Tonight, both my fellas are in bed and I’m wide awake because we are going to visit Drake’s preschool tomorrow and sign up for the 2 year old class.

I spent the day today organizing the crazy amount of things Santa and relatives gifted little guy with. A large box of “baby” toys are packed up ready to go in the attic. More because I can’t bear to part with them yet rather than the “just in case” reason the grandmas are hoping for.

Christmas was wonderful. D smiled for Santa, and opened his gifts and demanded, “OPEN, oooopeenn” for each one so he could play. We kept our gifts small and took suggestions from his EI therapists on what would help him most over the next six months.

Those two ladies in Early Intervention have been the biggest blessing and biggest healer of my psyche. It’s hard to believe I was ever worried about that program. Hearing how we are doing the right things has been balm to both mine and Daddy’s souls.

Tomorrow feels like the start to our new year. This is the year of the potty, and the Magical (yeah, right) catch up year of 2. Twenty two months old. He still refuses to eat on occasion. Spends other days begging for cookies or chocolate milk. It’s actually pretty fun to see the looks on people’s faces when I allow him that sip of coffee he’s begging for.

When your 22 month old is just 20 lbs, he gets anything (a taste at least) that he wants and actually asking for it is like winning the Powerball lottery. It was a beautiful holiday, so different from the quiet season in isolation last year. I feel blessed and thankful beyond words.

One moment in particular was very precious to me. When I was 21 weeks pregnant, my husband and I attended our church’s 5 o’clock children’s Christmas Eve service. It was December 2011. They asked for the youngest child to help with placing the baby Jesus in the creche in the Nativity scene on the altar. It brought so many memories of services as a child, being an acolyte, and my family 800 miles away. I sat through most of the service in tears or filled to bursting with the joy of the thought of my child possibly being the youngest the following December. Instead of the 17-19 weeks I thought I had left, D was born in mid-February about 9 weeks after Christmas. Instead of an Spring baby, I have a Winter one. And Christmas 2012 was spent at home, just the 3 of us.

Christmas 2013, my child finally walked in the procession with me holding him, and put the baby Jesus in the manger to the sounds of O Come All Ye Faithful. It was the first night he said Jesus. It was the first night he sang along matching tone with the piano. Two years of milestones. Two years of fear and joy and wonder and disappointment. Two years of miracles.

Peace to all preemie families out there getting through each day in the NICU, or RSV isolation and beyond. I wish you the joy of the season and hope for your future.

I feel awesome after this week of celebration and rest. I am ready to face the annual follow-ups and IFSP meetings I see on January’s calendar. I’m not feeling quite so ready for the first day of school, but I’m sure we’ll survive and come to enjoy that, too.